@sueinmn Hi, Sue, Actually, I I went back six years and found it mentioned in some notes I took when I was at Mayo-Phoenix for diagnostic workup. That entire process, I have thought until now, was a total waste because Mayo wanted me to spend another $10,000 to have the Whole Genome sequencing done. But there was a young lady doctor, endo, I believe, who mentioned that she thought CPT of some sort might reveal itself eventually. Then, in the past two years I have had genetic work ups by Ambry Genetics, Sequencing.com, and a few other labs. I saw this mentioned on multiple of these reports, so I have been checking. Anyway, I saw this named on one of the ER tv shows, and thought it sounded familiar, so I went back to check my records. The life patterns fit, the lab reports fit the symptoms and signs. I do not know yet how rare it is, but I have an entire page of CPT variants on my Exome. Now, just in case you wonder, at these moments I do not rely much on non-lab reports. However , they can offer background support for understanding I go back and look at Smart Charts, etc. , genetic lab reports and face-to-face. If there are only one or two notations, I usually ignore them. But 40 or 50 variants are hard to ignore, especially if they are spread over 6-8 years and 8 or ten labs, including being marked as pathogenic or perhaps Patho, MGUS, or similar. And if there are similar notations of serious issues against my body or future generations. In the case of the young doctor at Mayo, it even sounded in her voice that it might be a problem. Thanks, Doc. oldkarl